Tuesday 28 February 2017 was the tenth edition of Rare Disease Day and saw thousands of people from all over the world come together to advocate for more research on rare diseases. Many events were registered, including our ‘Scones for SCAD’ event.
Rare Disease Day is an opportunity to:
- raise awareness of rare diseases;
- call upon important stakeholders including researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community;
- recognise the crucial role that patients play in research.
The SCAD community have a fantastic relationship with the Leicester research team at the NIHR Leicester Cardiovascular Biomedical Research Unit (LCBRU) in the BHF Cardiovascular Research Centre at Glenfield Hospital. Patients and researchers are working together as a formidable team, pushing forward to understand this life-changing and potentially devastating condition.
To highlight the SCAD research and patient-researcher relationship, Beat SCAD and NIHR LCBRU hosted a day of awareness and fundraising at Glenfield Hospital. Members of the SCAD community kindly shared their stories and gained some fantastic media coverage.
The day began with an important feature on the BBC Victoria Derbyshire show: Young Women who survive heart attacks.
Firstly, the story of SCAD Survivor Nicki Owen was shared by the BBC whilst Nicki attended Glenfield for her first SCAD Clinic appointment.
Nicki said: “I came away feeling validated, listened to, cared for. It was a brilliant day all round.”
Two more SCAD Survivors featured on the live programme: Kate Alderton was interviewed in the studio and Catherine Beck remotely via video link.
Kate described her experience from March 2014: “I ran a 10K race the day before, but that was nothing unusual… In hindsight, I had the classic heart attack symptoms but you don’t expect that at 30… I thought I had a chest infection… The paramedics initially thought I was having an anxiety attack but an ECG showed some abnormalities.”
Catherine (pictured second from right, below) was 9 months pregnant when she suffered a SCAD 18 years ago. When Catherine started to feel unwell one morning, she explains: “Instinct kicked in that I just needed to get to hospital but I was just looked on as a lady who was going into labour. I had vice-like chest pain and became very unwell after being sent to the maternity ward. An ECG showed my heart was in trouble. The medics didn’t quite know what to do with my pregnancy but I had an emergency caesarean and fortunately Harry was born fit and well.”
Cardiologist and Lead SCAD Researcher in Leicester, Dr David Adlam was also interviewed remotely. He began: “Like a lot of rare diseases, this condition is often under-recognised and diagnosis can sometimes be delayed. One of the things we are trying to do on Rare Disease Day is raise awareness of Spontaneous Coronary Artery Dissection and the research we are doing into it.”
Dr Adlam (pictured below with Beat SCAD Chair Rebecca Breslin) explained how SCAD is a bruise within the wall of a coronary artery which compresses the artery causing a blockage which leads to a heart attack, rather than being an atherosclerotic plaque associated with inflammation and cholesterol which causes a conventional heart attack.
Dr Adlam continued: “SCAD is a very different cause for a heart attack and as a result it is very important to recognise and identify patients who are rather different than the patients we usually see presenting with heart problems.”
Victoria Derbyshire asked Kate and Catherine to describe the impact SCAD has had on their lives.
Kate explained: “It has had a huge impact on my life. I think about it happening again every day. I do feel a lot more tired as I have quite a bit of damage – I think because I left it so long to get help… Finding a ‘new normal’ summarises it quite well… Gaining confidence again in your body when you have lost that.”
Catherine: “It is a condition I have to manage every day but I am careful, I go to the gym and I look after my health, I make sure I am resting enough. I live as normal a life as possible.”
Later in the day, Kate was interviewed by her local radio station.
The Beat SCAD event at Glenfield Hospital included:
- Information stand in the main reception with leaflets about SCAD and Rare Disease Day
- ‘Scones for SCAD’ bake sale which raised £125
- Research participants undergoing study assessments
- Live Tweeting of the research experience
- NHS SCAD Clinic patient appointments
- SCAD patients meeting other survivors (Yes, docs – this happens!)
The NIHR and BHF funded research has given great hope to the SCAD community. Approximately 120 SCAD survivors have already been assessed, their data collected and under analysis but there are hundreds more people registered who are desperate to participate in this quest for answers.
Research days
Samantha Roberts (pictured below left with Rebecca Breslin and Alex Mortimer) was one of two SCAD Survivors to undergo her research day as part of the Rare Disease Day event. Sam was attending Glenfield on the eve of her fifth ‘SCADiversary’. She said: “It was a productive day… lovely to see Dr Abi and Dr Adlam… and great to meet up with other fellow SCADsters… I’m glad and lucky to be part of the picture to further understanding.”
An ITV News crew filmed aspects of the event and interviewed researchers Dr Adlam and Dr Abi Al-Hussaini, SCAD survivor and research participant Alex Mortimer and Beat SCAD Chair Rebecca Breslin. Watch the feature here.
Rebecca said: “Each time SCAD has featured in national media like the recent BBC and ITV coverage, we have managed to reach new members of the SCAD community: either patients with a SCAD diagnosis but otherwise limited information who have been feeling very isolated; or heart attack survivors without any understanding of why they had a heart attack who, upon learning about SCAD, suspect they fit the profile and will now ask their doctors about it. No doubt, there are more people like this that we need to reach. It is vital that we achieve that.”
Rebecca added: “It was a very enjoyable and successful day. There was a lot of interest from the public and I was able to meet a few more members of our group. I extend an enormous thank you to the Fundraising Department at University Hospitals of Leicester and to Martin Batty (BRU Manager) for permitting the event, to Fiona Bailey for her excellent PR work, and to all who helped make the day happen.”
Of course, even more awareness and funding are required to find the answers… And you can help us now with raising awareness.
